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Really feeling exasperated with the nhs system

Sorry but I just need to vent somewhere about how I am feeling today.

Really I am starting to feel quite annoyed with how the nhs seem to palm couples from one consultant and clinic to the next and when you do get there, it's almost as is they are unprepared for your appointment. Which I find unforgivable.

It is confusing enough when there is quite afew clinics we have been to, endocrinology, Monklands hospital infertility, genetics counselling and eventually Glasgow royal infirmary. We had our first out patients appointment with GRI today which we thought was a combined urology and infertility clinic. However the consultant had none of our notes,result etc, which we had to provide so he could at least review and give us his opinion.
We already know the reason for our infertility issues, Klinefelters syndrome, there is little chance of sperm retrieval and already know that donor is probably one of our only options left, but the consultant pretty much told us this all over again, no review of our next steps, moving on or even asked how we are feeling. My hubby had hoped he could still get SSR for closure reasons, however it doesnt appear this is the case and the consultant reckons three is no real point in doing so. Especially when my hubby needs to come off his testosterone replacement therapy for 6 months, wait another 3 months for an SSR rreferral, and the consultant believes the results will show nothing with an FSH level of 48. I suppose I can see why he is giving this based on his past experience in this subject, and he did say a biopsy can be done to begin with and go from there, but we have found today very disheartening, we had hoped that SSR, biopsy, or donor could all be discussed today, but apparently donor is another clinic!! I was also told I would maybe have to get a hsg or lap and dye at my last hospital appointment, but the was no mention of this. It all seems so disjointed and no one seems to want to be able to just deal with the issues all at one time, instead they are happy to waste people's precious time, sorry if that sounds selfish as I know hospital staff are up against it, but as a couple trying for a family, so are we.

We had more blood tests for genetic y deletions, cystic fibrosis, hep b and c, HIV for my hubby and AMH levels for me.

I have had almost enough and we haven't even got onto any treatment yet!! What does that say about me, am I too sensitive, demanding or unrealistic? My hubby just wants to know why his time is being wasted and get some answers and not told the same stuff by different doctors.

I understand your frustration. I used to try to get a copy of my notes so I could lend them out at NHS appointments if needed. You just have to be prepared yourself rather than rely on them, who are up against it too, as you said. It's the same for other conditions, not just fertility. Be very clear with your consultants and tell them exactly what you have written to us.
All the best.

I remember this feeling so well. I can only echo what Maria has said - get copies of everything whenever you visit and keep your own file that you can take with you to appointments. It is ridiculous that this is necessary, but I'm afraid it is.

Make sure that you get the laboratory reports with the exact test results and reference ranges stipulated - this is much better than the broad-brush information you get in the letters back to your GP.

Also, try and get hold of the name of the secretary of your consultant. If he/she is good, it can really ease things for you on the admin-side.

As for the biopsy - I can fully appreciate that you need to do this to know for sure where you stand. I think it is wholly reasonable to push for this.

Best of luck and take care

xxx

One beautiful boy born in 2010 but multiple attempts for a sibling very sadly had to stop.

I've calmed down abit thankfully I was off work this week anyway so was able to just chill out and forget about it for afew days. Thanks for your replies.

We have kept our results since day one, it was funny because the doctors looked at us like we had two heads when we asked for them and our GP asked why we wanted them?! Eh duh.....because we have had about a million tests and would like to be able to keep track of what's happening. Plus their my husbands so I think he has a right to those results. If I could give any bit of advice it would be to keep every letter, test paper etc because like us, you never know when another doctor might need them.

We have not really been told if we are actually on the acs list yet for this hospital, we have had letters saying they acknowledge our referral and that we will get notice of any appointments,but other than the urology appointment we have had on Monday no communication from the infertility side of the clinic and I'm confused as to how this is supposed to progress. Are we on some kind of waiting list for treatment or does this not happen until we have seen our infertility consultant? We don't know who our consultant is! They are probably getting the urology assessment first,then be seen by infertility with those results, because We are not zipped up the back, we understand this makes sense, but it would be nice to be told this.

If I'm honest a lot of the problems stem from not being told anything, lack of communication and poor levels of detail which doesn't give us confidence. It's a complex subject, but we are willing to go through all of the heartache, the very least the hospital can do is be straight with us and honest, we will put in the work to understand the our predicament. I don't mind if things are difficult and long, we would rather know this than be told white lies.

As I've chatted to u before you know where are also waiting on Glasgow royal. We had some pointless appointments and a bit of messing about. When we finally got to the infertility clinic they back dated our start on the waiting list to the date we were referred. Which was 6 months previous so it took a good bit off the weight time.

We have just had a letter saying we r near the top of list and have to go for blood tests for hepb HIV etc. so if u have had them you may be further on the process than you think. Although I completely agree some level of adult communication between the different departments and yourselves would be nice